Her story: Beverley Francis-Gibson knows about the pain of sickle cell disease—not as a patient, but as a family member who lost a loved one to the illness. She also knows about the harm done by the silence, rooted in ignorance and sometimes even shame, that is associated with the condition. Born in St. Thomas, U.S. Virgin Islands, in a tightknit family, she witnessed the misery endured by her cousin Vincent, who was born with sickle cell disease and was often so sick he couldn’t play with the other children. “It was very hot, so he remained indoors most of the time,” said Francis-Gibson. “He was hospitalized a lot, had jaundiced-looking eyes and seemed sickly to me all the time.” She was in high school when Vincent passed away. Because of her own family’s ordeal, Francis-Gibson became an advocate and, since March, the President & CEO of the Sickle Cell Disease Association of America.
Why understanding the disease matters: Even though Francis-Gibson learned about her cousin’s illness from his siblings and her mom, “to my dismay, I realized today how little my family knew about the disease. We never discussed its impact on our family, and in hindsight I realize now how much we could have helped others by sharing our stories, but didn’t.”
Her motivator: “I believe it is critical to raise awareness, particularly in the African-American community, about sickle cell disease. I refer to it as a ‘silent killer’ that ravages families socially, mentally, economically, and medically.”
Why she is optimistic: Now, more than ever, “there is lots of energy and excitement about the possibilities for a universal cure. More pharma companies are connecting with SCDAA and our member organizations to ensure patient voices are represented as part of the clinical trial process. There’s been more coverage by media about sickle cell disease. More advocacy groups are interested in coming together and working collaboratively to move the needle on services, treatment, legislation and a cure for sickle cell disease.” She is “truly grateful” to be a leader with the opportunity to unite the voices of those who are too often ignored or unheard.